At the University of Iowa, a multidisciplinary TSC clinic was formed in 2018. The shared clinic includes pediatric genetics (Dr. Sidhu) and genetic counseling, pediatric neurology/epilepsy (Dr. Ciliberto), and pediatric nephrology (Dr. Harshman). The purpose of this clinic is to provide coordinated, comprehensive care in parallel with guidelines from the TSC Alliance.

Tuberous sclerosis complex (TSC) is an autosomal dominant genetic disorder effecting 1 in 5000-10000 live births. TSC is known for the potential to cause severe neurologic manifestations such as intellectual and learning disabilities, epilepsy, and hydrocephalus. However, TSC is a multi-system disorder that can affect most organ systems including the skin, kidneys, lungs, and heart.

Because this disease has such a broad range of signs and symptoms, across the country, it has become the standard of care for academic institutions to develop multidisciplinary clinics for patients with this disease to provide comprehensive care in an efficient, caring, and multigenerational manner. Often, multiple family members are affected and benefit from comprehensive, family-centered care in a focused clinic.

This quarterly clinic currently serves approximately 50 pediatric patients with TSC. For questions about this clinic or information on how to refer a patient for comprehensive TSC care, please contact 319-356-8427 or email liberty-taeger@uiowa.edu.